For another Chronic Lyme patient who had COVID-19:
The first patient to speak is Representative Karen Whitsett who credits President Trump’s promotion of a malaria drug, hydroxychloroquine, with her recovery from coronavirus. Other COVID-19 survivors also speak after her at the White House. During their informal discussions, Rep. Whitsett, who had a severe case of COVID-19, brought up her chronic Lyme disease as an underlying condition. Throughout the 41-minute meeting, President Trump highlighted how serious and devastating Lyme disease is, stating that it “can kill you.”
Although the following patient DID NOT have COVID-19, her Lyme disease herxes made her think she might have had it.
Is it COVID-19 or a Lyme disease herx? One woman’s story.
By Julie Starling
The other night, as I soaked in an Epsom salt bath, I found myself missing my Siberian husky. We lost her in February, at age 12.5 years, to lymphoma. During my years of treating Lyme, she would barge in on me during my baths, whimpering. She knew how painful they were for me.
Crying in sympathy, she would plant several kisses on my face, and then plop herself just outside the door where she could keep a close eye on me. This time, I sulked alone, with only memories of her soft fur and sweet kisses to pass the uncomfortable 20-minute soak.
I had my own scare with COVID-19 last month. I had started treating Lyme again in January after joint pain and mild neuralgia had shown up in December.
By early March, I began to experience the common Herxheimer response, when toxins from die-off build up and the immune system sends in a rush of cytokines. The cytokine storm kicked up migraines, severe fatigue, short spiking fevers and insomnia.
In mid-March, when the San Francisco Bay Area was told to shelter in place, a dry cough showed up. You can imagine the thoughts running through my head as the cough continued day after day despite constant resting.
One night, I received an email from my Lyme doctors explaining their new office policies during the pandemic. The message was thoughtful and meant to clarify how their business would operate and support their patients through this difficult time.
But it was enough to send me into not one, but two panic attacks.
It’s funny how the body remembers. Despite working through panic disorder for two years after treating Lyme, it all came rushing back with just one email. The fear of not being able to get the care I needed was at the back of my mind. That was a learned response, common to most Lyme warriors after years of misdiagnosis.
But at the front of my mind was the fear of going to the hospital, where the risk of infections is higher and more dangerous for the immune-compromised. Add a viral pandemic to fear of being hospitalized, and you have a hearty recipe for panic attacks.
The next day, I called my doctor for a phone appointment and to get a plan in place. Information and action plans always ease my anxiety. She added one more medication and some supplements and sent me a COVID19 test. There was a lot of confusion on how to take the test, when to take it, and where to send it for processing.
It’s highly unusual for my doctor to be this inefficient or disorganized. It added to my own internal pandemonium and mental jumping to worst-case scenarios. It turns out that doctors, like the rest of us, must also figure out how to navigate the bureaucratic COVID-19 seas.
I learned quickly just how hard it is to get tested for the coronavirus, even when your doctor orders it. In the end, I got tested without having to go to the hospital. Thankfully, it came back negative.
My symptoms were the result of a cytokine storm from my Lyme medication.
Between a rock and a hard place
To a healthy person, trying to stay ahead of COVID-19 can be daunting. For the chronically ill, it can be nearly impossible. I found myself between a rock and a hard place. Should I treat Lyme and risk kicking up the cytokines while the coronavirus lurks around us? Or leave the Lyme untreated and tolerate its pain?
After watching a few podcasts from leading Lyme physicians and consulting with my doctor, I chose to discontinue treatment and let the Herxheimer response die down. It would be difficult to distinguish between cytokines from die-off reaction of Lyme disease and cytokines from the virus. It didn’t seem prudent to fight this battle now when COVID-19 can be so deadly, even to the healthiest among us. I realize that I’m fortunate to be able to make this choice at all. Many with chronic Lyme are in a critical period of treatment and don’t have the luxury of this choice.
It’s impossible to escape the news that bombards us every day with coronavirus statistics. The web offers a flurry of ways to disinfect everything coming into your home and how to protect yourself when you go to the grocery store. I read one story of a young woman with Lyme disease who did everything by the book and more. She disinfected everything that came in her home, sheltered in place, washed her hands repeatedly, showered when she got home and even used a UV wand to disinfect household items. Still, she contracted COVID-19.
I can’t control the future
So now I find myself decorating the chalkboard in my dining room with an old Buddhist adage and the very thing I need to hear most right now. It reminds me that no matter how vigilant I am, I cannot control every thing or person in my environment. That I cannot control the future.
The only thing I can do is live in the present and deal with what is in front of me right now. The best actions I can take are to keep my immune system supported, stay on top of my detox regimen, wash my hands silly, and sleep like my life depends on it. Above all, I should relax, because nothing is under control.
Julie Starling is a writer who has lived with Lyme disease for many years. She holds an M.A. in Health Psychology and is a certified yoga instructor. You may reach her at www.wilddingo.com or follow her on Instagram @ wild.dingo.